After over a decade of working in dementia research, I was recently asked to give a talk about how the NIHR Applied Research Collaboration (ARC) has influenced my career. We rarely get time to reflect, be that on our research, leadership, career journey, and more, given the fast pace of academia. However, being given the opportunity to contemplate on this is hugely helpful as it enables you to make clearer plans moving forward, where you want to go and what you want to achieve and do.
So let’s take that (up to now) career reflection. Having started working at the Personal Social Services Research Unit (PSSRU) Manchester, which is linked to the NIHR School for Social Care Research, whilst still completing my Undergraduate, then MSc in Neuropsychology, then my PhD in Neuropsychology at the University of Manchester, my research focus has been between the realms of neuropsychology and social care from the get go. In my PhD, I looked at the cognitive underpinnings of initiating and performing everyday activities in dementia, such as managing finances and medication, getting dressed and washed, and preparing a meal.
Simultaneously working in social care research at the PSSRU, my PhD topic certainly was different to the neuroscience-heavy work going on in the department. Assessing participants in the lab and doing computer assessments or brain scans was too lab-based for me. Instead, I wanted to see how people living with a condition were experiencing their everyday lives and their possible challenges. So, I went out and about throughout Greater Manchester and collected data with people living with dementia and their unpaid carers in their own homes, but with that neuropsychological angle of asking people to remember different coloured doors (on cards), different pictures and drawings, quickly remembering various digits (forwards and backwards), drawing clocks, and so much more.
After a 1-year research associate post at UEA, the North and the big cities kept calling me back.
This is when I took up a role at the then NIHR CLAHRC North West Coast (NWC), the forerunner of the ARC NWC. Already coming from a social care and relatively applied background, weaved in with less applied neuropsychology, the CLAHRC/ARC was certainly a mind opener in terms of how much more applied research can actually be. That included directly working with people with dementia, carers, health and social care professionals, and Third Sector organisations.
Prior to the ARC, I was used to some rare public consultations at the University of Manchester. Moving into a research collaboration made up not only of researchers, but also people with lived and caring experiences, health and social care professionals, Local Authorities and Third Sector organisations, I found research so much more engaging, and stimulating. It wasn’t about only having discussions with researchers (as interesting as they are!), but also with the true experts, the people living with and caring for someone, and those working or volunteering in the field. One thing the ARC does for example is encouraging having public advisers (so people with dementia, carers) as team members of research projects, in the grant development, and in the dissemination. Public involvement and engagement is not just a tick-box exercise.
Whilst there was no dementia research group at the University of Liverpool and the CLAHRC/ARC NWC at the time I joined, I was drawn to the cross-collaborative aspect of the ARC, but also to the focus on health inequalities in the NWC. There was already a great pool of cross-disciplinary expertise in dementia – from academic psychology and social care to frontline clinical, Third Sector, and social care and unpaid care. Getting used to the ARC way of working, the concept of the Liverpool Dementia & Ageing Research Forum emerged for example. A topic-specific mini-ARC so to say, focusing on dementia and ageing and bringing together these various stakeholders in the field. Almost four years later, and busy preparing our 5th annual Conference (submit your abstract by the 16th of June 2023 and register now!), the Forum has hugely benefitted from being linked to the ARC NWC, from connections with its member organisations to channeling the inclusive approach of public and stakeholder involvement into the Forum.
Without the ARC and the Dementia Forum, I would not have engaged as much with the public and professionals (one of the best parts about my work). I also most definitely would not have been developing a board game into dementia inequalities with colleagues, including the Lewy Body Society, and focus more on the impact of my research. And I wouldn’t have had the opportunity, and privilege, to now supervise three budding early-career dementia researchers, funded by the NIHR and the Alzheimer’s Society on 2-year postdoctoral fellowships into music and dementia, inequalities in hearing loss and Parkinson’s and Lewy Body dementia, and Dementia Care Navigators. Let’s hope this very collaborative and inclusive approach of research will continue!
Dr Clarissa Giebel is a Senior Research Fellow at the University of Liverpool and NIHR ARC North West Coast. Clarissa has been working in dementia care research for over 10 years focusing her research on helping people with dementia to live at home independently and well for longer, addressing inequalities that people with dementia and carers can face. Outside of her day work, Clarissa has also organised a local dementia network – the Liverpool Dementia & Ageing Research Forum, and has recently started her own podcast called the Ageing Scientist.
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